Our MDUK Muscles Matter 2021 seminars continued on Wednesday 26 May, virtually bringing together people living with muscle-wasting conditions from across the UK with a seminar on myotonic dystrophy.
We opened our myotonic dystrophy seminar with updates on the latest research. We heard from Judith Sleeman, looking at cell biology research (with apt comparisons to lava lamps), and from Dr. Chris Turner who took us through updates from drug developers, treatments and clinical trials around the world.
Ben Porter, Project Manager and Curator of the UK myotonic dystrophy and FSHD registry, then talked about how the registry plays a key part in pushing forward clinical trials and studies for the condition, and why people with myotonic dystrophy should join up. To find out more, you can go to the Registry’s website, read Publications that the Registry is involved with, and see which projects it has supported.
Following on from discussing progress in research, we were joined by specialist nurse Susan Macdonald, physiotherapist Charlotte Massey and Speech and Language Therapist Jodi Allen to discuss ways of managing myotonic dystrophy. They answered questions on orthotics, swallowing and dribbling, and exercise. One particular resource that stood out for our panel was the Myotonic Dystrophy Foundation Exercise Guide.
You can watch the full recording of the myotonic dystrophy seminar below or on our YouTube channel.
There will be seminars throughout the year in our MDUK Muscles Matter 2021 online seminar series, including condition-specific sessions, practical sessions such as financial support and psychological support to help you live well, and seminars looking into ways you can manage your condition such as cardiac management or diet and nutrition. You can see the full list and book these Zoom seminars here.